Newly diagnosed

FormerMember
FormerMember
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Hi 

in february i was diagnosed with grade 1 neuroendocrine cancer tumour of small bowel after alot of tests it was decided after the biopsy and diagnosis that they would do key hole surgery to resect the tumour after i spoke to the specialist nurses and the surgeon i had the operation on 18 th march 2021 that had started off as key hole surgery but unfortunately quickly changed to open surgery with a six inch scar up from my belly button i wasnt given a colostomy bag i stayed in hospital for two days then sent home i read through all of the paperwork and stuck to it i had a few problems opening my bowels but i did after i looked at my diet i started to get more active walking every day on week three of my recovery the colorectal nurse rang to ask about my progress and explained that the surgeon had not managed to get all of the tumour out as it was a tricky operation and the tumour was wrapped around the lymph nodes and had to remove some lymph node and part of small bowel i know this is a long post but was wondering if anyone has experienced this before as i am so new to this situation i have good days and bad but its a slow growing tumour which is good and i will be under surveillance every 6 months any advice would be gratley receved thankyou

  • Hi 

    Welcome to the forum ? I think someone else has just been diagnosed recently with a neuroendocrine tumour . My mum’s friend had one too and they seemed to be able to keep it at bay and her treatment was very manageable.  Another issue entirely unrelated sadly occurred but she was maintained for years like that . 
    I think she was managed with a form of hormone injections if I remember right but she was well with it .

    Glad you are recovering well .

    Take care ,

    Court 

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